NIMH Wants to Know What Direction Autism Research Should Go

... or at least they say they do.

I encourage you to write to them tomorrow and let them know what you would like looked at. Take a moment right now to put your thoughts down to be sure you get it in by the Jan 4th deadline.

From NAA:

Respond to NIMH's Request for Information about Autism Research Priorities


Due Tomorrow, January 4, 2008

Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD)

The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions.

Background
The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

Treatment - includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.

Diagnosis - is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.

Risk Factors - has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.

Biology -studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Information Requested
We are interested in receiving your input and ideas about what are high-priority questions and issues for advancing research on ASD. We ask for your constructive and specific suggestions in the following areas (please refer to the above descriptions for each area).

What topics or issues need to be addressed to advance research on the:

1. Treatment of ASD?
2. Diagnosis of ASD?
3. Risk factors for ASD?
4. Biology of ASD?
5. Other areas of ASD research?

Responses
Please send responses to iacc@mail.nih.gov no later than January 4, 2008.

Please limit your response to two pages and mark it with this RFI identifier NOT-MH-08-103 in the subject line. The responses received through this RFI will be collated, summarized, and provided to scientific workshop participants in January 2008. Summarized results will also be made available to the public. Any proprietary information should be so marked. Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.

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The following are suggested topics to cover:

* Highest priority should be on preventing new cases and treating individuals already affected.
* Congress made clear in the Combating Autism Act legislative history that NIH MUST investigate vaccines including preservatives as possible causes.
* A vaccinated vs. unvaccinated population study must be conducted.
* In order to better understand the mechanisms of autism onset, and consistent with new emphasis on early detection and treatment, a specific program should be undertaken, probably inpatient, to study newly diagnosed (suspected) cases of ASD to examine in vivo the specific processes and developmental mechanisms involved during onset.
* Documentation and publication of "recovered" cases.
* Evidence-based validation or rejection of treatments (behavioral and biomedical) currently being used to treat existing cases.

Process issues at NIH regarding autism research

* All workshops and workgroup meetings must be open to interested parties.
* Transparency and frequent opportunities for public input and feedback.
* The urgency of the epidemic demands all deliberate speed.
* Workgroup Chairmen must not have financial conflicts.
* Workgroups and workshops must have balance reflecting the diversity of views on cause and treatments for ASD, and not be biased toward past paradigms.
* The point of the Congressional mandate in the Combating Autism Act was to reprioritize and redirect research funding, not to simply repeat past funding hoping for a different outcome.